New to site - Humira Advice

kayoswald

Hi, I am new to this site but after 14years of putting my head in the sand I think I need help and advice from people that suffer as I don't seem to get much help from my hospital!
I have been on humira for well over a year now and seem to suffer a few side effects and each time I mention them to my Rheumy nurse she seems to dismiss them but now I am starting to worry that the Humira may cause more harm than good. I am definetly a lot better on the Humira but as its still relatively new, I am now concerned. I have suffered with dry, lumpy itching skin which was dismissed by my doctor and rheumy nurse as normal but I know isn't as I have always had good skin. I always seem to have a blocked nose now, have experienced weight gain, despite dieting and exercising, have lower back pain and now insect time bite lumps on my arms and legs? This week i have had my injection and have been so tired, its such an effort to put one leg in front of the other.
Anyone else wonder if this is worth continuing with? I also take methotrexate once a week which gives me nausea for two days after. Ok I am going as I now feel like I am moaning!!!!

theresa4

HI

I was on biologics for 3 years ish (tried 4 of them) and always felt ill on them like I was walking through mud, and had constant ENT problems. It was only when I reacted to Cimzia (severe itchy hive like rash) I had to come off it and had 6 months break. I had no ENT problems after 3 months of no biologics and I stopped feeling ill not completely but the dragging ill feeling had gone. I am now still on abreak form biologics as they havent really helped me and to be honest they made me feel worse. Even though the rheumy dept wouldnt agree that the biologics were the problem I know my body and the dfference they were making.
As for methotrexate I too feel ill for 24 hours and tend to slep it off for a day as when I took it out of my meds I could not walk at all the pain was unbeaarable so weighing it up the cons were not as bad as the pros.

It has to be a personal choice as my experience isnt yours just go by how you feel and if you feel its bio's making you ill see about taking a break but it has to be over 3 months so they come out of your system properly. The other thing is if they are working for you then you need to weigh up the pro's and cons like I did with mTX .

Good luck

Theresa x

dreamdaisy

Hi kayoswald, it's nice to meet you though I am sorry you have had to find us.

I too am on humira and I also do my own injected meth. Humira can cause quite a few side-effects and if your concerns about it are increasing then I think you should talk to your rheumatologist. The extensive list of effects that is on the leaflet mentions inflammation of the skin which might explain the dryness and lumpiness, I have noted that I have become far more tasty to the biting things since I started this combination of meds, and as for the tiredness, well it is difficult to pin that down: is it the meds or is it the arthritis trying to flare but being suppressed? Could the blocked nose be due to a cold that cannot manifest due to the immuno-suppressants? I don't know as I am not a doc, but if I feel a cold coming on I stop the drugs, let it happen then resume once I am symptom-clear. (That is on the advice of my hospital.)

These are powerful meds and they have to be because immune-system arthritis is a powerful beast. If the humira is helping then that is a very good thing indeed, but I think you need to talk this over with your rheumatologist. I wish you well. DD

kayoswald

Thank you Theresa and DreamDaisy for your replies. I am too thinking that maybe I need to take a break from the Humira, sometimes you forget how ill and bad things were before you took it! I have had breaks from it before, but not probably longer than two months. Do you still receive the funding if you take a break?
I too am constantly itching and been told time and time again that it has nothing to do with the Humira. I was told the same about the weight gain and then they changed their minds with that one. I do feel like my hospital are all for Humira and as my bloods are always good are reluctant to listen to my worries and try anything else.
I have made a call to my Rhuemy nurse and am waiting for them to call me back now. I am not due to see them until December but think I may take a break for a while and see where that takes me.
I can live with the Methotrexate and the nausea, I have tried the injection but that didn't help much and made my vision a bit distorted.
Thanks for you help, actually makes me feel better talking on here when I didn't think it would. Thank you

dreamdaisy

My bloods have been lovely since I started humira, but that's the only bit of me that is. I recall another forum member (who is out an about today) had a real problem with humira and it took a while for her docs to realise that she was right and they were wrong. I cannot remember what her troubles were, :oops: but if she spots your post I am sure she will reply so I hope you look in again over the next couple of days.

When I say stop I mean I only miss one dose (in the case of the h), that is usually enough for any infection to clear. I miss up to two doses of the meth (and feel a deal better for it in myself) as a belt and braces thing. I have to go, I hope you are feeling a little better about all of this now. Take care. DD

frogmorton

Hi Kay

l know nothing about anti tnf sorry still coping ok on hydroxy and colchicine, but would like to welcome you to the forums from me.

I see you have received some advice from some who do have experience, but l think you have made a decision already and that the time has come for a proper chat with your rheumatologist rather than the nurses??

Love and luck

From

Toni xx

kayoswald

Hi Toni, thank you for your message!

I am sorry, I shouldn't laugh but an appointment with my rheumatologist is like gold dust, I never get to see him! My appointments are always booked with him but then he just reads my notes, then gets the nurses to see me who then pop in and see him for advice on what to do!!! That's why I get so frustrated!
I have had a chat with them today and they have suggested I can take a break from the Humira or the Methotrexate (which could also be causing the tiredness) but I had that warning that my arthritis will flare up and I have to weigh up the pros and cons - do I want to suffer damage to my joints and or take my chances with side effects that may or may not happen?!!!!
At least they have offered me an appointment in October so at least I don't have to wait until December and that gives me a few weeks to think!
I think the prospect of cold damp weather for the next five months or so doesn't help either!!!
Thank you all for your words and help, I feel a bit better now!!!
xx

frogmorton

Kay

well done you for at least speaking to the nurses.

I think it's pretty bad that you get palmed off like that :evil , but well-done for getting an appointment in October. That is a lot sooner than December.

I do hope you get on ok.

Do keep in touch - we are a nice bunch on here and will care how you are.

Love

Toni xx

tkachev

I take Humira and it does make me very, very tired and the worst day of all is injection day. I now have to plan to take it when kids are at school so I can rest up.
I used to have an awful time with nausea and MTX but now take anti-sickness pills and they have really helped. I do get odd times when I still suffer from nausea but usually because I haven't given the pills enough time to get into the system or not taken enough.
Despite, I would not stop on the humira because I am really a different person and I do remember before hand being bent up and in extreme pain day and night. I have had to stop due to chest infections and even with this break it takes a good few weeks for the pain to come back for me. If you take a small break do inform the rheummy Nurse and monitor how you feel very closely.

Elizabeth

skezier

Hi Kay,

Sorry i am late but glad you found the forum and a big hi to you.

You have had some good advice there already and I am not on the any of the anti's but it does sound like you need to come off that one for sure.

Try and see the rumo..... Its not a good system that....

I really hope you can find someone to help you and again dig in, kick off but try and see the rumo....Nice to meet you. Cris x

tillytop

Hello and welcome to the forum from me! Glad you have found us.

Your Humira "story" is very familiar to me. After taking Humira without any apparent problems for a couple of years or so, I started to get some unpleasant and unexplained symptoms - including dreadful itching and skin lumps and bumps. And I too was told over and over again that the symptoms I was experiencing were "unlikely" to be caused by the Humira, and told I should remember how bad my RA would be if I wasn't taking it etc etc. Even when my face swelled up suddenly (classic allergic reaction) I was advised to go to the dentist because it was probably a tooth abscess being masked by drug (I did - and it it wasn't).

Anyhoo, after nearly a year of being sent from hospital appt to hosp appt for investigations to look for non-Humira related reasons for my symptoms the rheumatologist said "well I still don't think it's down to the Humira but you might as well stop it for three months and see if things improve". And - you guessed it - as the Humira worked its way out of my system, things improved dramatically. I was lucky enough at my next appt to see a different rheumatologist who, looking back at what had gone on, agreed that the Humira WAS behind all my "mystery symptoms" and was happy to have a two-way discussion as to "what next".

Because of the Humira debacle, I was reluctant to go straight onto another anti-tnf, although I was given the option. So I decided to take a break and I spent nearly a year on just mtx and prednisolone. Despite a difficult and uncomfortable year I am very glad I took that break - and I have recently started on another of the biologic drugs - Rituximab - which, although not fast acting, is really beginning to do its stuff now. I have recently stopped the meth (which was making me feel very rough) and am now managing well on only a small dose of pred alongside the Rituxmab.

So my advice to you would be that, if you feel the Humira is the cause of the problems, to do as the rheumatology nurse suggests and take a break from it - and then if your symptoms are improving, you will be able to report back at your October appointment and, hopefully, to plan a better way forward.

Like you, I was worried about the funding issue but what happened in my case was that, because without the Humira, I still met the relevant criteria for biologic meds, there was not a problem. Hopefully the same would be true in your case.

Please do let us know how you get on - you will get lots of help and support.

Thinking of you.

Tilly xxx

ratface

Hi,

I was on Humira but only for 4 doses as sciatica started in my right leg after having 3 doses of Humira. So I came off of it. Just told my rheumy nurse that I wasn't going to have it again. She went off to look at the complete list of side effects that they have access to and assured me that sciatica was not listed but told me that the list of side effects was 'extensive'.

Coming off of the humira hasn't helped the sciatica - still have it unfortunately. I have recently started on Rituximab infusions instead of the humira. I have only had 1 course (2 infusions done 15 days appart) and dont know yet if it will be effective.

With regards nausea and mtx. I have been on it for many years. I take 1 folic acid tablet on Monday and Wednesday evenings and then 7.5 mtx. on a Friday evening. I did suffer slightly with nausea on Saturday mornings when I first started taking it and found that eating a light breakfast helped (toast or something) as I don't eat breakfast it did take a bit of doing. However, after a few weeks the nausea stopped of it's own accord. I think its because my system adjusted to taking it. Hopefully you find the same.

Regards,

Ratface xxxx

barbara12

Hi Kay
Sorry I cant help, but I just wanted to welcome you to this lovely forum, has you are already finding out , we really are a friendly and supportive lot.
Hope you stay with us, and I wish you well with the rheumy.

kayoswald

Morning everyone, thank you all so much for your replies, I feel better now, I hadn't realised that this would help so much, I dont feel like its just me now.
I do think i may give the Humira and/or Metho a break though, I need to see if it is them that is causing all these added things. I have also realised I have been on the Humira for over two years, time flies! Also, I think since I have been on the Humira I have been suffering severe pain, mainly at night in my hands and feet, different from the RA pain. This is a burning sore sensation, sometimes my feet get so hot I want to stick them in ice water. I have had various nerve tests done, been on Amiltriptyline (which gave me palpitations) and none of these have helped and again Rheumy nurses have dismissed this. I have also had my feet scanned! They put it down to oesto arthritis now! I do wonder if thats the Humira!
Also, Tillytop, you say you are now on Rituximab, was that easy to get as I was told that if i fail on one biological treatment, NICE wouldnt fund another one. I have just looked up Rituximab and it says they won't prescribe that if you have zero negative RA, which is what I have! I was originally diagnosed with Lupus, so I do sometimes wonder what I have! Maybe I have something else entirelly!!! I am considering going back to my GP too and asking for a refferal to another hospital. I have done this in the past but been talked out of it as they say the doctor I see is the best and I have a relationship now with them but I don't see that!
Thank you all again for your kind words, I will definitly be coming back here. I did look at this site when I was initially offered Humira, the advise I saw helped me make my mind up then, I only wish I was brave enough to join back then!
Hope you all are having a nice weekend, sun is nice but its turning cold! xx

tillytop

Hello again Kayoswald.

So glad you are finding this site helpful. I wish it had been around when I was first diagnosed with RA 16 years ago!

Before I go any further, I just want to say that, for anyone looking into this thread who is considering starting Humira, please don't let my experiences put you off - I really do just think I was unlucky and I know that there are a goodly number of people on the forum who take Humira without any problems at all.

You ask about funding for alternative biologic drugs - well Rituximab is my third one and I was lucky in that I had no problem getting it but I know that, at other health authorities it is not always so easy. My consultant told me that, as you say, Rituximab is thought to work better on sero positive RA but, I believe that Infliximab and Enbrel are widely used for both sero positive and sero neg disease. I don't know what NICEs current stance on prescribing second or third biologics is but I thought that, after much campaigning by various arthritis charities, the "one shot only" policy had been changed. The AC helpline (number at the top of the page) might be ble to help you find out, or you could try the National Rheumatoid Arthritis Society (NRAS). I do know though that there are a good number of people on this forum who have had more than one biologic. It would be good I think if you could read the appropriate NICE guidance though because then you know where you stand and are in a better position to discuss this with the hospital when the time comes.

I understand completely why are you thinking about changing to another hospital - I went round that loop too. I also had numerous appointments with many and varied specialists to try to find out what was going on and began to wonder if, in fact, I had something else wrong with me. And at one point I was so desperate I said I was going to stop all my meds at once cos I couldn't cope any more. But my wonderful husband, who is an engineer by training, said something very wise which might help you as it did me - one of the basic principles of fault-finding is to make one change at a time and evaluate the results before changing anything else. So, for example, if you think the Humira is the root cause of the problems and your rheumatology nurse has said you could try stopping it, then once you have made that decision, stick with it and don't change anything else until you can see for certain what difference the lack of Humira makes.
For me, deciding to stop the Humira, made me feel in control of things again - rather than feeling that I was "at the mercy" of the docs and the meds and I certainly felt less desperate about things. And I wonder if, by changing hospitals at this point, you might actually end up confusing things further because their take on things might be different again.

One final thought before I stop rambling - what I did was to keep a very detailed diary of all my symptoms - however insignificant. I listed them out down the page. with the dates along the top of the page and, each day, I scored the symptoms out of 10 (0 if not there at all, 10 if at their worst). That way, I could see how things were changing once I stopped the drug, and I had some "hard evidence" to show the rheumatologist if need be. I also took photographs, where possible of skin rashes, swelling which were useful to show how things had been in case they had disappeared before I saw the doc again.

Sorry for the long post - but hope some of it has been helpful.

Thinking of you.

Tillyxxx